Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

When Is The Best Time To Gluten?


EmiPark210

Recommended Posts

EmiPark210 Contributor

I know I've posted a lot about my biopsy and the process to get me here... but the date has FINALLY been set. I will be done testing April 19th at 8:30am! Very exciting.

 

But here's my issue, cause there always seems to be one. I don't know when to time my gluten intake. I'm a college student who has classes on and off from 9:30am till 5pm. My morning classes are the most important for me to be 100% at because I have Russian language every day and it's very participation based. I am also part of the Masters swimming club which is at 6:30 Tuesday/Thursday and 8am Saturday. I also have a vision issue where I have holes in my right retina so I'm missing parts of my visual field. This makes nausea very difficult to deal with because it's even more disorienting because I can't see completely. For now, the holes are something I just have to live with and adapt to. My professors have been warned about all the issues this is causing and I am planning to talk to academic support tomorrow to see what they can help with.

 

My symptom cycle (as I've been able to figure out): 30 minutes post glutening, I get nauseous which leads to extreme dizziness and a strong desire to lie in a dark room with my eyes closed until it goes away. 6-12 hours later I have sulfuric flatulence that at most is highly embarrassing and slightly uncomfortable. 40 hours later, my body starts preparing to expulse all the gluten and just clear out my gut in the process. This causes major gas build up which is uncomfortable while sitting and a sense of urgency in terms of clearing it out. Usually by 50-60 hours after I am glutened I'm back to normal. This morning I had nausea 40 hours post glutening though that might have been more vision related than gluten but I'm not sure. 

The last time I got glutened (Tuesday), it was from a cross contaminated potato chip with a possible brownie crumb. I haven't been being careful because I know I'm going to have to eat gluten for the next three weeks anyway. But I haven't fully started going back on it because I've had a ton of tests and stress this week with school. I know I need to start again...I just, in my nauseous brain fogged state, need help with the math.

 

Update below: Day 1 of eating gluten and my confusing response.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

I don't know if there is a good time...I would suggest the evening because then the immediate symptoms can be experienced at home or while sleeping. I'm afraid if you are consuming gluten every day, there will be no getting around the lingering symptoms... eventually you'll be having symptoms on most days.

 

Hang in there.  :(

ravenwoodglass Mentor

Have you talked to your doctor about your symptoms and their impact on your functioning? Since you have positive blood tests and experience clear symptoms post glutening maybe they can give you their 'official' diagnosis without need of a challenge.

EmiPark210 Contributor

I got academic support on board to help with note taking now that I'm not going to have tests until a couple weeks after the endoscopy so that should help. 

 

I didn't get a complete blood pannel done, only ttg IgA because I didn't find this lovely forum until a week or two afterwards. I've only been able to discern the gluten cycle after going off it and scheduling all my appointments. I would just hate for in the future to find out that I can't be accommodated because I only had a blood test or something like that. I'm certain it's celiacs but I just never want to have to get near gluten again after this. I'm fine on my vitamin levels; I got those results back. The only thing I'm deficient on is vitamin D which makes sense when today was the first "sunny" day since December. 

 

I did mention that I could tell exactly when I had gluten and that I was worried about how much of an effect it has to which he replied that it would be best to finish my testing now. 

EmiPark210 Contributor

I started totally back on gluten last night (instead of not worrying about/encouraging cross contamination), and I was trying to not look for the symptoms...but they weren't there at all. When I first began noticing a gluten sensitivity, I noticed I could handle it better if I had a protein heavy meal and this was true last night as well. I'm having some of the later symptoms which is almost a comfort. But I'm confused... Is there any way that my protein consumption could mitigate the initial stages of my gluten reaction? Because if so, then that makes this a lot easier to deal with. For reference I had about 35-40g protein last night with dinner (bacon, egg and cheese breakfast burrito and a dessert of 3/4c greek yogurt). 

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,116
    • Most Online (within 30 mins)
      7,748

    Mary Pack
    Newest Member
    Mary Pack
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Colleen H
      Anyone else get pins and needles. ??? Burning feeling ? Heat makes it so much worse 😔  Winter is here.  I had to lower my thermostat because I couldn't take that hot air feeling 😔  Hopefully it goes away soon     
    • trents
      I assume that you already know that genetic testing for celiac disease cannot be used to confirm a celiac diagnosis. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. It can be used to rule out celiac disease with a high degree of confidence, however, in the case where the genetic testing is negative for the genes. Until and unless you are actually diagnosed with celiac disease I would not raise this as an issue with family. However, if you are diagnosed with celiac disease through blood antibody testing and/or endoscopy with positive biopsy I would suggest you encourage first degree relatives to also purse testing because there is a significant chance (somewhere betwee 10% and almost 50%, depending on which studies you reference) that they will also have or will develop active celiac disease. Often, there are symptoms are absent or very minor until damage to the small bowel lining or other body systems becomes significant so be prepared that they may blow you off. We call this "silent celiac disease". 
    • trents
      If you were off gluten for two months that would have been long enough to invalidate the celiac blood antibody testing. Many people make the same mistake. They experiment with the gluten free diet before seeking formal testing. Once you remove gluten from the diet the antibodies stop being produced and those that are already in circulation begin to be removed and often drop below detectable levels. To pursue valid testing for celiac disease you would need to resume gluten consumption equivalent to the amount found in 4-6 slices of wheat bread daily for at least two weeks, preferably longer. These are the most recent guidelines for the "gluten challenge". Without formal testing there is no way to distinguish between celiac disease and gluten sensitivity since their symptoms overlap. However, celiac disease is an autoimmune disorder that damages the small bowel lining, not true of gluten sensitivity. There is no test available for gluten sensitivity so celiac disease must first be ruled out. By the way, elevated liver enzymes was what led to my celiac diagnosis almost 25 years ago.
    • trents
      Then it does not seem to me that a gluten-related disorder is at the heart of your problems, unless that is, you have refractory celiac disease. But you did not answer my question about how long you had been eating gluten free before you had the blood antibody test for celiac disease done.
    • Xravith
      My genetic test results have arrived - I’m homozygous for DQB1*02, meaning I have HLA-DQ2. I’ve read that this is one of the genes most strongly associated with celiac disease, and my symptoms are very clear. I’m relieved that the results finally arrived, as I was getting quite worried since my symptoms have been getting worse. Next step, blood test. What do these results imply? What should I tell my family? I’m concerned that this genetic predisposition might also affect other family members.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.